All extracorporeal membrane oxygenation survivors need follow-up either at the extracorporeal membrane oxygenation center or in their community, as evidenced by the 1-year follow-up data. Our 1-year extracorporeal membrane oxygenation follow-up clinic provides an opportunity to engage with families, identify neurodevelopmental concerns, and signpost to appropriate services. Of concern, one third of survivors are lost to follow-up, some with an acute neurologic event on extracorporeal membrane oxygenation, a significant risk factor. A consensus-based standardized national follow-up program is vital.
ObjectiveTo describe neurodevelopment and follow-up services in preschool children with heart disease (HD).DesignSecondary analysis of a prospectively collected multicentre dataset.SettingThree London tertiary cardiac centres.PatientsPreschool children<5 years of age: both inpatients and outpatients.MethodsWe analysed results of Mullen Scales of Early Learning (MSEL) and parental report of follow-up services in a representative convenience sample evaluated between January 2014 and July 2015 within a previous study.ResultsOf 971 preschool children: 577 (59.4%) had ≥1 heart operation, 236 (24.3%) had a known diagnosis linked to developmental delay (DD) (‘known group’) and 130 (13.4%) had history of clinical event linked to DD. On MSEL assessment, 643 (66.2%) had normal development, 181 (18.6%) had borderline scores and 147 (15.1%) had scores indicative of DD. Of 971 children, 609 (62.7%) were not receiving follow-up linked to child development and were more likely to be under these services with a known group diagnosis, history of clinical event linked to DD and DD (defined by MSEL). Of 236 in known group, parents of 77 (32.6%) and of 48 children not in a known group but with DD 29 (60.4%), reported no child development related follow-up. DD defined by MSEL assessment was more likely with a known group and older age at assessment.ConclusionsOur findings indicate that a ‘structured neurodevelopmental follow-up pathway’ in preschool children with HD should be considered for development and evaluation as children get older, with particular focus on those at higher risk.
BackgroundTeamwork is a critical component during critical events. Assessment is mandatory for remediation and to target training programmes for observed performance gaps.MethodsThe primary purpose was to test the feasibility of team-based self-monitoring of crisis resource management with a validated teamwork assessment tool. A secondary purpose was to assess item-specific reliability and content validity in order to develop a modified context-optimised assessment tool.We conducted a prospective, single-centre study to assess team-based self-monitoring of teamwork after in-situ inter-professional simulated critical events by comparison with an assessment by observers. The Mayo High Performance Teamwork Scale (MHPTS) was used as the assessment tool with evaluation of internal consistency, item-specific consensus estimates for agreement between participating teams and observers, and content validity.Results105 participants and 58 observers completed the MHPTS after a total of 16 simulated critical events over 8 months. Summative internal consistency of the MHPTS calculated as Cronbach’s alpha was acceptable with 0.712 for observers and 0.710 for participants. Overall consensus estimates for dichotomous data (agreement/non-agreement) was 0.62 (Cohen’s kappa; IQ-range 0.31-0.87). 6/16 items had excellent (kappa > 0.8) and 3/16 good reliability (kappa > 0.6). Short questions concerning easy to observe behaviours were more likely to be reliable. The MHPTS was modified using a threshold for good reliability of kappa > 0.6. The result is a 9 item self-assessment tool (TeamMonitor) with a calculated median kappa of 0.86 (IQ-range: 0.67-1.0) and good content validity.ConclusionsTeam-based self-monitoring with the MHPTS to assess team performance during simulated critical events is feasible. A context-based modification of the tool is achievable with good internal consistency and content validity. Further studies are needed to investigate if team-based self-monitoring may be used as part of a programme of assessment to target training programmes for observed performance gaps.
Objectives: To examine parental experiences of childhood extracorporeal membrane oxygenation survivors to understand: 1) the problems children faced and 2) the support received following hospital discharge. Design: Single-center descriptive study. Setting: Nationally commissioned center for neonatal and pediatric extracorporeal membrane oxygenation. Patients: All traceable survivors less than 18 years old who received extracorporeal membrane oxygenation from January 1998 to April 2013. Intervention: Anonymized postal questionnaire completed by parents of extracorporeal membrane oxygenation survivors. Measurements and Main Results: Parent-reported developmental problems, follow-up, and the degree of satisfaction with any follow-up experience. Parents of 89 of 366 extracorporeal membrane oxygenation survivors (24%) responded. Sixty-six (74%) reported having developmental concerns about their child, including speech and language (n = 32; 36%), concentration (n = 28; 31%), movement/physical difficulties (n = 26; 29%), and educational difficulties (n = 22; 25%); 46 (52%) indicated that their child had difficulties across multiple domains. Twenty-one (34%) of those with one or more reported developmental concerns were not receiving any follow-up. However, 57 (64%) attended our 1-year follow-up extracorporeal membrane oxygenation clinic and 54 of 57 (95%) found it very useful. Three themes related to perceived need were identified from parents’ free-text comments: the need for an expert point of contact and follow-up at the extracorporeal membrane oxygenation center; more information on extracorporeal membrane oxygenation and any long-term effects; and more support from, and easier access to, community specialist services. Conclusions: A proportion of children who have undergone extracorporeal membrane oxygenation treatment have needs that are not being met, with variable access to service provision. Structured follow-up after discharge would enable early identification of developmental concerns, permit early referral or intervention, and provide support to families. Education and sharing of information about extracorporeal membrane oxygenation with general practitioners/family physicians, community professionals, and schools are essential.
Background Over 5000 paediatric cardiac surgeries are performed in the UK each year and early survival has improved to > 98%. Objectives We aimed to identify the surgical morbidities that present the greatest burden for patients and health services and to develop and pilot routine monitoring and feedback. Design and setting Our multidisciplinary mixed-methods study took place over 52 months across five UK paediatric cardiac surgery centres. Participants The participants were children aged < 17 years. Methods We reviewed existing literature, ran three focus groups and undertook a family online discussion forum moderated by the Children’s Heart Federation. A multidisciplinary group, with patient and carer involvement, then ranked and selected nine key morbidities informed by clinical views on definitions and feasibility of routine monitoring. We validated a new, nurse-administered early warning tool for assessing preoperative and postoperative child development, called the brief developmental assessment, by testing this among 1200 children. We measured morbidity incidence in 3090 consecutive surgical admissions over 21 months and explored risk factors for morbidity. We measured the impact of morbidities on quality of life, clinical burden and costs to the NHS and families over 6 months in 666 children, 340 (51%) of whom had at least one morbidity. We developed and piloted methods suitable for routine monitoring of morbidity by centres and co-developed new patient information about morbidities with parents and user groups. Results Families and clinicians prioritised overlapping but also different morbidities, leading to a final list of acute neurological event, unplanned reoperation, feeding problems, renal replacement therapy, major adverse events, extracorporeal life support, necrotising enterocolitis, surgical infection and prolonged pleural effusion. The brief developmental assessment was valid in children aged between 4 months and 5 years, but not in the youngest babies or 5- to 17-year-olds. A total of 2415 (78.2%) procedures had no measured morbidity. There was a higher risk of morbidity in neonates, complex congenital heart disease, increased preoperative severity of illness and with prolonged bypass. Patients with any morbidity had a 6-month survival of 81.5% compared with 99.1% with no morbidity. Patients with any morbidity scored 5.2 points lower on their total quality of life score at 6 weeks, but this difference had narrowed by 6 months. Morbidity led to fewer days at home by 6 months and higher costs. Extracorporeal life support patients had the lowest days at home (median: 43 days out of 183 days) and highest costs (£71,051 higher than no morbidity). Limitations Monitoring of morbidity is more complex than mortality, and hence this requires resources and clinician buy-in. Conclusions Evaluation of postoperative morbidity provides important information over and above 30-day survival and should become the focus of audit and quality improvement. Future work National audit of morbidities has been initiated. Further research is needed to understand the implications of feeding problems and renal failure and to evaluate the brief developmental assessment. Funding This project was funded by the NIHR Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 30. See the NIHR Journals Library website for further project information.
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